Friday, 9 October 2009

A DILEMMA

Is there ‘an answer’?
 
1. The ICF survey for the World Health Authority

On 16 September Conductive World reported on a survey to be carried out on behalf of the World Heath Organisation by the Child and Family Research Institute of the University of British Columbia, to see what ‘experts in cerebral palsy' think of the International Classification of Functioning. It seemed a shame that, though acknowledging that parents are ’experts in their own children' the investigators had not also considered including conductors in their list of potential professional experts.

I even made a snide remark about the survey’s having been approved by the university’s ethics committee, since its outcome would be predetermined (you might say rigged) by assuming unquestioningly from its outset that disability is a priori a matter for the ‘health professions’, to be defined through their assumptions as enshrined in the ICF.

Though my initial personal inclination was to let the WHO get on with it, I urged conductors and conductive parents to write in and register for that survey. Some soon posted comments on Conductive World to confirm that they had done so.

There are now at least a few conductors registered, and at least one conductive parent. So, if there were none before, then this intervention has achieved one purpose: Conductive Education is at least now on the survey's books!

I could hardly persuade people to do something that I would not do so myself so, defining myself as ‘a psychologist’, I too registered and have been added to the list (psychologists like conductors not having been been on the original list of potential ‘experts’ either).

So far, so comfortable…

Susie Mallett, however, posted a comment offering a rather less comfortable perspective on the whole matter, including a stern reprimand to me for taking part at all:   
…After receiving a lot of information about the ICF, last year through the Association of Conductors Working in Germany, I decided that this was not at all relevant to my work as a conductor and I do not wish to spend my time on a survey deciding on relevant areas of 'functioning;'. This is a survey the specific aims of which are 'to identify strengths and challenges in functioning important to children and youth with CP and to quantify these strengths/challenges using ICF-CY'. The only relevant 'function' there is in my work is learning.
If the survey at any time asks for experts to give their opinion on the actual ICF then I will be more than willing to give them my time. If anyone finds out that it is indeed possible to express such personal opinion please let us all know. I would appreciate the opportunity to do this but do not believe this is what I am being invited to do here. In the meantime I am finding out whether the information I received last year was indeed from the Department of Physical Medicine and Rehabilitation at Ludwig-Maximilian-University in Munich, one of the collaborators in this survey.
Andrew, I am actually surprised that you are inviting conductors to sign up for this. Perhaps some of them that do so do it in the belief that ICF is something worthwhile. If this is the case I would be interested to hear from them how and why.
I assume, correct me if I am wrong, that the reasoning behind your posting is that you think that conductors should be on this list of experts so that the fact that conductors and Conductive Education actually exist gets known. Are there not better lists for us to be on somewhere in the world than this one? I do not feel at all happy that conductors are giving their names to anything that involves supporting the ICF.
Norman Perrin, who had been one of the first to register and be accepted for this survey, then added:
Susie's comments are suitably cautionary.
That was me told, all the more painfully since I too have considerable reservations of the likely efficacy of feeding my own systemic understandings into a ‘classification of functioning’ if there are no means to state reservations about the very idea of this.

Still, in for a penny… I shouldn’t volunteer if I cannot take a joke. Let us see how it turns out. I dared write in response to Susie’s strict rebuke:
For the moment, however, I shall give it the benefit of the doubt, then see how the questions are framed and how the resulting data are presented. That will be the time to see whether misgivings have been justified and to decide what if anything to do next. In the meantime I do hope that a reasonable number of conductors and conductive parents have also been in touch, so that the investigators do at least know that there is somebody out there in CE-land.
In the meantime, I asked her to find out what happened to the German conductors’ contribution to the earlier stage of this study, and there the matter has lain for less than nearly a month… then up pops another survey.
2. Cerebra’s survey satisfaction with ‘treatments and therapies’

This involves only the UK. Professionals are not included, just service-users.

Again, in reporting this Conductive World has urged users of conductive services to take part, so that Conductive Education might at least be included in the findings. Otherwise, when the results are published, CE might simply find itself written out of the story.

Norman Perrin immediately commented:
I just don't know… I've had a poke around the Cerebra Research Unit web site, and I just don't know. I've no reason to knock Cerebra, nor the Research Unit. But the whole thing is avowedly medical, contained within a health service world view, practice and lexicon.
One might just as well say good luck to them and wish the venture well. Hesitation? Yes. No doubt the medical world must continue to engage with itself in a never-ending discussion of what works and what does not: apparently the purpose of the new Unit. But as a parent I want to ask other questions than those solely to do with the health of my child with cerebral palsy. And as an educator, too, I want to ask different questions.
In neither case do I want to hand over the whole child to the health service - as some sort of solely medical specimen. In both cases, I want my questions to address the learning development of the child, his or her education, schooling and how citizenship is entered upon; upbringing and parenting and 'teachering'. My concern is with the person that the child is becoming and not just 'interventions'.
I suppose I am wanting to consider the child as a whole, a unified being… And, for me, that's where Conductive Education comes in  seeing the child as a whole and as a becoming-person.
So I don't know. I congratulate Cerebra on setting up the Unit… And if the Unit is wholly medical then that is what it is and is what they want to do and good luck to them, and it's not their fault that there is absolutely no equivalent discussion in the worlds of education or child care or anywhere else as far as the upbringing and parenting and learning and teaching of children with cerebral palsy are concerned…
So I don't know. I don't think I shall attempt to disturb the work the Cerebra Unit is planning, by challenging them to broaden their remit to education or insist on their taking account of conductive education. Let them get on with it.

Another hesitation? Yes. I don't know…
I don’t know either…

Hard choices
  • Susie chose to stay out.
  • After a bit of soul-searching, I decided to go in.
  • Norman has chosen to go into one but perhaps not the other…
I am sure that any of us could have been swayed fairly readily to decide the opposite, and then perhaps sway back… I do not think that we are people unsure of our opinions. The problem here is that we find ourselves on a knife edge. This little dilemma, take part in these surveys or don’t, epitomises one of the difficult and persistent problems permeating much of CE’s relationship with its world.

What are the logical possibilities here? I can think of five, perhaps others would think of others…
  • Autarchy. Just stay aloof. Conductive Education has its own paradigm, which most people ‘outside’ just do not understand (correspondingly, people inside CE may not altogether understand what is going on outside, leaving the conductive folk, from the outsiders’ point of view ‘not of this world’). Why not stay outside, the world outside is often not a nice one, CE would be very happier, one often feels, just to let the rest of the world go hang and get on with its own existence, if only allowed to.
  • Take part, join in, work for change from within. One often hears this advocated as a work-path for conductors. but I do not think that I have heard satisfactory report of its ever having worked. Nor would one expect it to, given the longstanding and extensive literature on this model for effecting organisational change (I think particularly of the ‘hero innovator’) and the personal and professional burn-out that may await the brave souls who try it.
  • Fight. Take on the existing systems, structures and professions and face them down on their own terms. Easier said than done, not least because parents have children to bring up, and conductors have to earn money, and reasonably wish for satisfying and peaceful professional careers. Going head-on could so easily wreck a child’s upbringing and a familys access to such services as there are, or a conductor’s professional prospects.
  • Alternatives? Fudge and compromise. Get by. Hope for the best. KBO*, and watch Conductive Education’s place in its world stay very much as it has been.
How does this apply to the dilemma presented by these two surveys?
  • Susie’s response is one of uncompromising autarchy.
  • Norman is on for the first survey but feels strongly drawn to the autarchic wing for the second.
  • By urging people to take part in both these surveys I see myself as succumbing here to the change-from-within model even though, like Norman, I fear that the dominant paradigm will uncomprehendingly absorb and lose anything that is said to it that lies outside its own hegemonic terms of reference.
And the third option, fight? For myself, I shall keep my powder dry, treat these surveys in good faith, then see what they come up with. This will surely reveal interesting things about the WHO’s position and about the conceptual framework within which families in the UK have to bring up their children notwithstanding. It may also offer useful information on how ‘the system‘, as manifest in these two surveys confronts and restates the reality of bringing up and educating children with which it is surrounded. Then if there is something to get our teeth into, and if your circumstances permit it, fight.

These two surveys are still open. Follow the links on two postings from Conductive World below, and register yourself. The more the merrier.

* Keep buggering on (W. Churchill)

References

The passages quoted from Susie and Norman are only extracts. If you wish to read the comments in full, and the original postings, go to:

Sutton, A. (2009) An open invitation to experts in cerebral palsy: conductors are not invited, Conductive World, 16 September
http://www.conductive-world.info/2009/09/open-invitation-to-experts-in-cerebral.html

Sutton, A. (2009) ‘Experts’: a conductor acts, and gets a promising result, Conductive World, 17 September
http://www.conductive-world.info/2009/09/experts-conductor-acts.html

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